Seeking zebras of color

I don’t know how this doesn’t get more press or notice, but it’s become increasingly and glaringly obvious to me that all of the awareness raising around EDS, MCAD and “friends” (what I call the Chronic Constellation here) is almost exclusively being done by white people. And mostly females. Or at least that I’m aware of.

The latter I can see for somewhat obvious reasons to anyone who spends much time in the support groups: for whatever reasons, including hormones panels, etc., women are noticeably more hypermobile on average than males and so are easier to spot. (Dr. Tinkle mentions that progesterone makes you more lax in his book on Hypermobility.) We also seem to have more issues with our tissues possibly from that same hormone panel differences lending to increased MCAD (both female hormones are MCAD triggers it turns out).

I may just be missing some pockets of blogs and voices I might find easily with a little searching. Please gently apprise me of same if so. But in general, most of the Tweeting and Facebook posting I see is pre-dominantly white, including my own.

And to my knowledge, none of these diseases discriminates across races. And I never see any pictures of black people in the groups or on Twitter or in the medical texts. Just white people. So I thought why not try signal boosting with my platform. But I just need some voices to boost. Please email me to that end at:

I will readily admit, it’s super easy to see a bright red flush in my lily white face and neck than perhaps in a black person’s, but that doesn’t mean they don’t experience any. Nor scarring, or dislocations or bendiness, or fibromyalgia or pain.

I have a sneaking suspicion that as hard as I have found it to be to get recognized, validated and diagnosed as a white, cis-gendered hetero-normative person, it’s only that much harder for everyone else likely due to racism and bigotry in medicine ON TOP of the usual medical gaslighting we all experience to some extent based on so much misinformation still. At least in the western world that I’m aware of.

So I’d like to solicit some voices of color to write me and share their experience, and perhaps provide a guest post or two on my blog. I want to signal boost your experience and increase awareness in the black community at a minimum, and other ethnicities and races worldwide.
Hakim, Keer and Grahame state in their 2010 tome:

“There is wide variation in the prevalence of JHM [joint hypermobility] in the literature depending on the populations explored. It is three times more common in females than in males, of higher prevalence in Asian and African races than Caucasians, and diminishes with age. Generalized or polyarticular hypermobility may be present in 10-30% of males and 20-40% of females in adolescence and young adulthood (Hakim and Grahame 2003a).”

From Hypermobility, Fibromyalgia and Chronic Pain, 2010. They go on to say further:

“There has been no study specifically addressing the prevalence of JHS. One study of JHM in a New Zealand Maori and Caucasian population also included an assessment of the JHS phenotype; from this a prevalence of 0.75% could be calculated (Klemp et al 2002).”

I’m pretty sure these diseases don’t discriminate, and can be found world wide. Again, we’re just mostly hearing from English and North American patients like myself to date. I’ve seen a few posts from France, and was finally followed by a Spanish organization on Twitter whom I retweet often. But not much else.

I admit, I can only read the Latin and Cyrillic alphabets, limiting me there. But even here in the US, I never see zebras of color posting. And I think that’s a shame, as I’m quite sure they are just as affected if not more so, and could use some proper recognition. Just like how the autism community is asking us to post “nothing about us without us”, I realized black, Latino and other zebra communities may be feeling the same way. I have added as many international organizations as I could find on my support page here.

My intentions are pure, and my sentiment genuine. I’m seeking to signal boost, not “Jansplain”, smile. Let me know what else I and my privileged colleagues can do to improve on this situation, thanks.

2 Responses to Seeking zebras of color

Your observation is an important step in furthering the cause of helping those afflicted with musculoskeletal issues involving hypermobility. I’ve wondered the same thing, especially as I frequently visit a discussion board for people with my disorder, Ehlers Danlos Syndrome hypermobile form. I too have rarely seen a photo of any member not “white,” either. To look at me, you’d think I was the same, yet I’m part Blackfoot Indian.

From my perspective, one of my geneticists made a comment that makes me sad for the entire EDS community and applies here. An older man at the University of Michigan who diagnosed me said he was certain one of the most famous “black” performers in modern history had the disorder but failed to reveal it to the public. Upon hearing it, I agreed.

Here are the clues: This talented singer was supremely flexible in his mesmerizing onstage dancing, was known for multiple health problems and was a pain drug addict, which ultimately killed him. So who was this potential ambassador for EDS that dropped the ball in educating all the races on hypermobility disorders, including presumably his own?

Considering that EDS is a genetic disorder it would actually be surprising if there was a great deal of diversity. Many genetic disorders occur primarily in one race or a handful of races due to the founder effect. EDS like other disorders can arise from a spontaneous genetic mutation and that is an explanation as why hEDS is sometimes seen in other races. Another reason like in the example of Michael Jackson possible having EDS is that there are almost no African Americans without European ancestors.